. . . a funny old life with multiple sclerosis

Tag Archives: MS nurses

Just out of interest and because I’ve been bored in work recently (sorry, boss), I’ve been asking people what MS conjures up in their minds.

My random and unscientific survey threw up some depressing results; according to my motley panel of vox-poppers, MS is:

An older person’s illness

An illness that means you have to give up work as soon as you’re diagnosed

An illness with no treatment

An illness that will propel you into a wheelchair soon after diagnosis

An illness that absolutely everyone has a story about, normally, ‘oh my auntie/great-grandad/batty neighbour had that, dreadful it was. How they suffered’ (sad face)

It seems MS has a serious image problem.

When I tell them MS is the most common neurological illness in young people and is generally diagnosed between the ages of 20 and 40, they’re astounded and/or disbelieving.

So what’s going on? Is it that we’ve made astonishing progress over the last 30 years, but the image remains the same? Take my dad for example. He was diagnosed at the age of 28 and died at 35 in 1978 from complications arising from his MS. There was no treatment and he was sent home with a walking stick and back then, MS was even referred to as ‘creeping paralysis’.

Five years later, in 1983, the MS Society gave a £1 million research grant for the purchase of the first MRI scanner in the world to be solely dedicated to MS research, changing the way MS is diagnosed.

A decade later, in 1993, the first three MS specialist nursing posts were created. Today, there are 270 MS nurses in the UK. In the same year, interferon beta-1b was the first drug to ever be approved for the treatment of MS. There are currently 10 licensed disease modifying drugs and 8 more are in the pipeline.

Is it simply that MS is mostly an ‘invisible’ illness, only making itself apparent to everyone else at it’s more serious stages? What is the true picture of MS? Is it time to re-brand MS?

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Tomorrow it will be exactly a year since I was unceremoniously ushered out of the MS Limboland waiting room and into a whole new world of clinically definite multiple sclerosis.

MS has had an impact upon every area of my life. Everything has been transformed and I’m not the same person I was last May, but for my MS anniversary, I am going to concentrate on the positive changes.

I’ve done my grieving, I’ve cried myself hoarse. I could either live out a sad, bitter life, railing against the injustice of it all or seize this opportunity to change my life for the better.

I’m full of gratitude for the support network I have – the family and friends who stuck by me through the dark times. The ones who made a swift exit? Probably for the best, eh? I’m indebted to all the healthcare staff who pulled me through and who continue to support me and I’ve made a whole new circle of brilliant friends.

Being bullied at work and subsequently sacked simply for having MS showed me that when I’m pushed into a corner, I can still come out fighting. Ironically, as my colleagues were trying to crush my spirit, the whole experience made me stronger, braver and has restored my self-esteem.

Probably the biggest transformation though, is within my own character. I’m no longer willing to live a life according to what is ‘normal’ or what is expected of me. I am choosing my own path. For far too long I have gone through life reacting to the whims and actions of other people, forgetting in all the chaos that in fact, I had a choice all along.

It took something far bigger than those people to turn my world upside down and to put into perspective just how fleeting and how beautiful life is. MS is here to stay, for now, and as long as it does, we have to learn to get along. It’s part of me, so I can’t hate it. I have to keep learning to adapt, take the good days with the bad. Is the transformation complete? You betcha. Phase One at least….